State & Lake

Lupus is an autoimmune disease that can affect various parts of the body, including the skin, joints, heart, lungs, blood, kidneys and brain. Normally the body’s immune system makes proteins called antibodies, to protect the body against viruses, bacteria, and other foreign materials. These foreign materials are called antigens.

In an autoimmune disorder like lupus, the immune system cannot tell the difference between foreign substances and its own cells and tissues. The immune system then makes antibodies directed against itself. These antibodies — called “auto-antibodies” (auto means ’self’) — cause inflammation, pain and damage in various parts of the body.

Inflammation is considered the primary feature of lupus. Inflammation, which in Latin means “set on fire,” is characterized by pain, heat, redness, swelling and loss of function, either on the inside or on the outside of the body (or both).

For most people, lupus is a mild disease affecting only a few organs. For others, it may cause serious and even life-threatening problems. Although epidemiological data on lupus is limited, studies suggest that more than 16,000 Americans develop lupus each year.

The Lupus Foundation of America (LFA) estimates between 1.5 - 2 million Americans have a form of lupus, but the actual number may be higher. More than 90 percent of people with lupus are women. Symptoms and diagnosis occur most often when women are in their child-bearing years, between the ages of 15 and 45.

In the United States, lupus is more common in African Americans, Latinos, Asians, and Native Americans than in Caucasians.

Source: Lupus Foundation of America

Lupus (its full medical name is systemic lupus erythematosus) is a mysterious illness. Although various aspects of it were described as far back as the 1840s and it was recognized as a systemic disease well over a century ago, the cause is still unknown and a cure still elusive.

Like AIDS (the letters stand for acquired immunodeficiency syndrome), lupus involves the immune system. There the similarity ends. Lupus is not transmissible from one individual to another; in no case has contagion even been suspected. In the majority of patients it does not prove fatal. And the illness is essentially the opposite of AIDS: The body’s defenses don’t falter or flag but become hyperactive, fiercely assaulting an individual’s own tissues as if those tissues were offending intruders, foreign agents that must be destroyed or expelled. It  is as if one has developed immunity to oneself, and lupus is classed as an autoimmune disease (the prefix “auto” means “self”); indeed, it is considered the prototype, the prime example, of such diseases.

Some other autoimmune conditions involve a single organ or system; diabetes mellitus and Graves” disease, affecting the pancreas and the thyroid gland, respectively, are among them. In lupus, the targeted tissues may be any from the skin to the joints to vital organs, and evidence of lupus activity may range from a bothersome rash to critical kidney dysfunction. Lupus runs the gamut from a persistent nuisance to a threat to life in different people, or in the same person at different times. Lupus is a battle of the body against itself.

There is no cure, nothing that will vanquish the disease. Although there may be periods of remission when little or no treatment is necessary, lupus is chronic, a lifelong presence. But there are many effective ways of dealing with its manifestations, both its minor annoyances and its major complications.

Lupus, as every lupus patient knows, is a frustrating experience. Your physician cannot explain its cause, predict its course, or promise a cure. This bafflement, this inability of medicine to clarify the nature and outcome of lupus, has led, as many medical mysteries do, to speculation, to theories, to a continuing search for solutions. It has also led, at times, to the spreading of outrageous misinformation.

Until the 1970s, lupus was little known to the public and even to writers of popular home health guides. It’s not surprising that some books published in the 1950s and 1960s characterized lupus as “rare,” or as “a disease of the skin.”

I think it is surprising, and disturbing, that, in 1988, a major U.S. health magazine published an article describing lupus as “an often-fatal degeneration of the nerves that”s hard for physicians to diagnose” and stating that it “tends to run in families.” If you, as a lupus patient — or as a member of a lupus patient’s family — had seen that article, I can imagine how distressed you might have been.

Lupus can be difficult to diagnose, especially for an inexperienced or uninformed physician; that much is accurate. But I assure you that lupus is, in fact, not often fatal. Many examinations of survival rates in lupus patients have been published over the years — and those years have made a difference. A summary published in 1955 showed a five-year survival rate of only 50 percent. Another summary, published in 1964, reported a survival rate at five years of 69 percent, and at ten years of 54 percent (no ten-year figure was included in the 1955 report). Recently reported studies, conducted in the United States and in Europe in 1989-1991, have shown five-year survival to be 89 to 97 percent and ten-year survival from 83 to 93 percent.

The tremendous jump in these survival rates is, by the way, a little deceptive. Treatment of lupus is indeed far more effective today than it was in the 1950s, and the outlook for the patient is far rosier now than it was then. But diagnosis has also come a long way in these four decades. The 1955 survival rate of only 50 percent was doubtless based on only a fraction of those who actually had lupus, and those who were “counted” probably represented the most serious and complicated cases. Even today, many cases of lupus are still not diagnosed, so the most recently published survival rates are probably low.

Lupus is the Latin word for “wolf.” It was first used in the mid-nineteenth century to denote a disease characterized by “malignant ulceration often destroying the nose, face, etc” (the definition in the first U.S. medical dictionary).  *  Someone probably thought the damage caused by the disease resembled the result of an attack by a ravenous wolf.

The full medical term for the disease described above, which is totally unrelated to the condition now called lupus, was lupus vulgaris (the latter Latin word simply means “common” or “ordinary”). That term is now obsolete, and the modern name is cutaneous tuberculosis. This form of TB results in extensive ulceration and tissue destruction and affects the face more

Excerpt from: Living with Lupus: All the Knowledge You Need to Help Yourself. Contributors: Sheldon Paul Blau - author, Dodi Schultz - author. Publisher: Perseus Books (Current Publisher: Perseus Publishing). Place of Publication: Cambridge, MA. Publication Year: 1993.